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Sangye,

The neuro didn't explain any difference. With the CT scan there was the "advanced atrophy" to dig into, but not a huge concern. The MRI also showed the atrophy but additionally showed the...

Thanks Sangye, its been a chronic issue since January. I suspect longer but only documented that far back. My entire spine is in pain with a burning feeling too, I'm sure its all gotta be related. ...

So far all my bloodwork is normal except for the c-anca/pr3 (as of two weeks ago). I did a search of wgs and lymph-blah and there are cases. I think this is my life lesson to gain patience.
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I just received a call that I have this bilaterally in my neck area and along my jugular vein. Of course I have to wait for a doctor who is willing to do something about it. It does explain all the...

Can we get someone to make a crazy drama filled reality show starring weggies?

Can you pace yourself today. Go slow and selectively participate? I hope you gain some strength that will carry you though today. I didn't watch the commercial because the thread alone makes me cry....

Myalgias and neuralgias seem to affect almost everything these days. But I'm without dx nor treatment. For me, everything hurts and nothing is unaffected. Wish I could help more. I sure hope it...

I find it interesting that white matter is what we call certain brain matter, but it's also a term used to describe an abnormality in the brain. The report suggests several spots have white matter...

I feel like as the patient, we should be the ones to decide, I'm thinking you agree. But I can only speak for me, and the unknown is much worse then knowing. Thanks for the well wishes. It does feel...

Thanks for the light, I can feel it.

That's so interesting, thank you for sharing. I'm going to sit my husband down and have him connect the dots with me. Yes, please let me know the outcome....

I was wrong, it was the WBC that was 3.5

I obtained the results of my brain MRI today. They look good. There are two comments, 1) atrophy 2) white matter (usually associated with stroke or small vessel something). The neurologist said she...

Thank you for sharing your story, Karen. I believe it will help someone, someday.

Please don't suffer in silence anymore. You will always find a listening ear here. The members of this forum are...

I'm clinging to this, Don. I needed that.

Thanks Kathy. Your so right, knowing is everything. As Don said, I'll be able to see the enemy. With that my attitude changes. When my attitude is in check, I can move forward.

I have a question....

Yes, a pillow! I haven't had that surgery but I've had four other surgeries in my belly and hugging a pillow helped lots.

Glad you have answers. Sending good vibes and prayers your way.

"I'm blessed to have a platform to share my life, and there is a responsibility that comes with that, so I'm doing everything I can to drive awareness about kidney disease and lupus as well as...

Maybe someone should bring wegs awareness to him. He could be stuck in the same dx cycle. Is that silly of me to think?

:predrage:

I took your advice, Sangye. I visualized the canoe scene....and was quickly overcome with fear. I dislike water very much...a small detail I forgot about....haha. can you believe I did...

Thanks D.! I hope you're right....

Thanks Sangye! He did say MRI, but when I mentioned just "adding" the order to my scheduled MRI (brain) next week, he said it wouldn't work because it's a different machine. Maybe he was thinking...

It's a little like Lightwarrior's said. This is one of the worst dx to have. But having the illness without dx (and treatment) is even worse. So even though it may seem as though we are wishing for...

Thank you for the bday wishes. Christi, your story is touching, so very real and all too familiar. Thank you for sharing.

Thanks guys. I'm persistent with your help. I mean, I'm pretty demanding (in a kind way) but had it not been for your info I wouldn't know what to ask for/expect/research.

Even better, I went to...

You're pretty famous yourself, Marta.